JacobyD

I am really sorry to hear about this financial cycle. We feel crummy, we go see a doctor and tell them that stress knocks us out for days, weeks, or months. They put us through all sorts of tests. They send us home with no diagnosis or treatment, and then they start calling us and telling us they will take our house away if we don't pay them . I was recently 'invited' by a well known businessman to travel to Texas to get 13 days worth of testing performed by his 'personal' team of doctors. They basically told me to go home, stop taking my medications, and get a job. A couple of weeks later, I received a bill for over $6,000, and I am lucky enough to have a great health insurance policy. I could have gotten more compassion and insight from the 'welcome guy' at the local Wal-Mart! Guess I'll start sending them $25 a month for the rest of my life... -Dan

Awesome! I live in your neck of the woods and would love to see this doc someday! I fired my PCP a couple of weeks ago for giving up on me . Good luck with the job and e-mail me with more info about the practice so I can sign up! Best, -Dan

Thanks for all the great input. I can't wait to try this stuff. I've had some mild stomach trouble over the last couple of days and want things to settle down before piling a new med on top of things. I have had some bad reactions to SSRIs in the past, but was also at my worst and started on high doses. I am going to take it slow this time as it seems so many people benefit from this class of med. I will keep you posted! Any more stories would be appreciated! -Dan

Hello all. I am about to start taking Paxil to help with anxiety related to my tapering off Lorazepam. I am also starting biofeedback and/or cognative behavioral training on 10/13 that should also help with the taper. Anybody here have any experience with Paxil? I hear the first couple of weeks can be kind of rough , but if you can get through it the benefits are worth it. -Dan

Hi Stacey. I was on 50mg of Inderal (Propranolol) for over 2 years. Before starting my HR easily reached into the 170 bpm range when standing/walking. After adjusting to the Inderal (which took a few weeks), I was able to get around with my HR well below 115 bpm, with a resting HR of around 65-75 bpm. I had a series of autonomic tests performed this past summer, and the cardiologist believed that my heart was deconditioned and that the BB was keeping my heart rate low during walking and other exercise. This kept my heart from re-conditioning itself, so they took me off the beta blocker entirely. After a day or so, my HR would average 120-135 bpm upon standing, but with daily walks and some recumbent biking (and lowering my synthetic thyroid hormone dose), it is now around 100-115 bpm when standing/walking. On my 'bad' days, it can still creep up into the 120s and even 130s. Since posting my original message this morning, my cardiologist wants to try me on a very small dose of a calcium channel blocker to see if that helps with my blood pressure. I'm going to do a little research before taking that first pill tonight Hope I answered your question! -Dan

Hi all. I have had a strange series of events that my 'everyday' cardiologist is not thinking about in terms of my condition as a whole. In June, I stopped taking my Beta Blocker (50mg of Inderal per day). Just after I stopped taking the BB my standing HR was around 135 bpm. Over the last several weeks I have been taking short walks, using a recumbent bike for very short periods, and trying to remain upright as much as possible. As time goes by my HR is decreasing. Today it is around 110 bpm when I am up and walking around. Here's the problem. As my HR is decreasing my BP is increasing. This morning is was 135/95, and has reached 145/105 many times while my HR was considerably low. I don't want to simply approach my cardiologist and have him prescribe BP medication, though I may have to. Has anyone here experienced this or have any theories as to what causes this type of reaction? Thank you for your input in advance! I would hate to have to bother Dr. Grubb at this point, but the high BP is causing an increase in my symptoms and anxiety ! -Dan

I just tried Propel myself. I am very sensitive to sugar. It did taste very sweet, but I had no problem drinking the whole bottle. It's a little pricey for a bottle of flavored water, but if it has some of the positive effects of drinking Gatorade without the sugar, it seems well worth it to me...

I used to fight the 'anxiety' theory tooth and nail until I realized that with many of my body's 'automatic' functions failing, I started to think maybe it wasn't so odd for me to experience a 'panic attack' without me actually being in a situation that would cause one in a healthy person. I am very careful in relaying to my docs that I had an 'anxiety' attack, as this would simply fuel their theory that anxiety is the source of my symptoms and not a symptom in itself. Stacey - I hope you don't experience many more episodes like the one you described! Best, -Dan

SparkNik- I began taking Lorazepam (a powerful benzodiazepine) more than 2 years ago for muscle spasms and have developed tolerance (I no longer get much of a positive effect from the drug) and an addiction which has been diagnosed as a contributing factor to my anxiety and 'throat closing' episodes. I am in the process of trying biofeedback, hypnosis, and cognitive behavioral training along with a non-benzodiazepine type anti-anxiety medication. I would highly recommend that you try a non-benzodiazepine type med first. Maybe an SSRI or one in the tricyclic family. If you do end up on a benzo, don't use it for more than a couple of weeks at a time without taking a medication 'holiday'. Best of luck, -Dan

Thanks Nicole! I could use some today as we are a couple of hours away from the peak of hurricane Isabel (Richmond, Virginia)! I hope everyone in the storm's path is dealing with this mess without too much trouble! -Dan

Looks like the www.KirkmanLabs.com site is back! -Dan

As I mentioned before, I am starting to taper off my high dose of Lorazepam (Brand name Ativan - a Benzodiazapine). I was prescribed this medication over two years ago for throat spasms, but it is poison at my current dose and I need to get off of it and find an alternative(s). Does anyone here have experience with Zoloft in helping control anxiety (like the kind I am sure to encounter during withdrawal)?

I, like most of us, had the same 'there's nothing wrong with you' speech given to me at the ER. Because their lab tests and scans don't pick something up, there must not be anything wrong with you - unless it is psychological. The 3rd time I went to the ER with tremors, dysphagia, and tachycardia (165+ bpm) I was getting the same treatment when fortunately an ER doctor who was one of my company's clients came in and had me admitted. This led to my EKGs, MRIs, Tilt Table Test, and Echocardiogram, which led to the initial diagnosis of autonomic failure. I don't know how many more months I would have suffered and continued to return to the ER if that doctor hadn't stepped in and admitted me... -Dan

I'm up for it! I have a hard time sticking to schedules, and might not be able to make it depending on how I feel on a particular day. This would keep me from being the 'host' for this kind of event any time soon. Some of the Richmond/Charlottesville Virginia folks talked about getting together before, but it kind of fizzled out. I think its a great idea though.... -Dan

Just a note on the acidophilus. I have used it in the past following a period of antibiotic use, and find the Kirkman products to be 'Dysautonomia Friendly' in that they don't contain any sugar, wheat, gluten, soy, artificial flavors or colors. I still use their Vitamin C product and I know there are many others. I am still on a feeding tube and the more stomach trouble I can avoid, the better! On a peculiar note, I have noticed their web site has been down for a few days - www.KirkmanLabs.com. So who knows, maybe they have been shut down for false labelling ! Don't know if the DDS or Probion products are similar... -Dan

Baclofen - 15mg three times a day (Total 45 mg) - Neck/throat spasms Synthroid - 137 mcg - Thyroidectomy in 1996 Lorazepam - Too much

I feel for ya SparkNik! I live in my wife's town with none of my blood relatives anywhere in sight. My wife is a WONDERFUL caretaker but her family thinks I'm wacko. Even when I feel I really need someone to stay with me at the house, my wife's relatives just roll their eyes and tell my wife I need a shrink. Maybe I do need a shrink, but I could also use some support from the family and from my docs. This is the toughest thing about having this kind of illness. You gotta really think and act for yourself most of the time. Hang in there! We know how you feel! -Dan

Hi Jessica- Your son is very cute! I tend to get anxious when I don't sleep well. That seems to be a major factor that triggers most of my symptoms. I also have had a lot of trouble with throat spasms, which is why I was originally prescriped Lorazepam. I found the Lorazepam also helped a great deal with most of my symptoms (except tachycardia), including anxiety. The down side is that any time I called one of my docs when I was feeling worse, they simply replied "take more Lorazepam". With that said, I have been on a fairly high dose for over 2 years and have a lot of work ahead of me to taper off the drug. There are many other classes of anti-anxiety meds that should be just as effective and non-addictive (Lorazepam is a Benzodiazapine like Valium). I am looking in to things like Paxil and Effexor (I believe these are classified as tricyclics????), though I have no personal experience with either. If you are experiencing anxiety, I have learned that it does trigger other symptoms, so if you can control it safely go for it! Best, -Dan

Hi Elaine. I am on a fairly high dose, and would like to find a substitute that doesn't have the addictive properties. There is a professor of Neurology in England named Heather Ashton who has focused on benzodiazapine addiction and withdrawal. Her 'Asthon Manual' can be found at www.benzo.org.uk. It has some very useful information. I am not planning on tapering unless I can find a suitable, less addictive substitute. As for now, I continue to enjoy its positive effects. Hope this helps, -Dan

I have been using Lorazepam for just over 2 years, and it has really helped with my symptoms though I am now trying to come up with a way to taper off the drug. I am going to try crossing over to Diazepam first and then taper since Diazepam stays in the bloodstream much longer and withdrawal is supposed to be much easier. I will still need some kind of med for anxiety. Any suggestions? I don't have low blood pressure, but I too have tachycardia (85-90bpm supine, 125-140bpm standing). -Dan

Thanks Tim! The Invision Power Board folks are great. Good work! -Dan